Privacy is an ambiguous, powerful concept that, while meant to protect individuals, often shuts down useful conversations and innovations. As we continue to unpack our #MedX topic, Privacy: Preventing Harm or Innovation, by flipping the panel and actively engaging conversations I am struck by the notion that perhaps the word privacy does not fully address what we are examining in the context of social media and online communities. The Merriam Webster dictionary defines privacy as “the state of being alone: the state of being away from other people: the state of being away from public attention.” If we are engaging in online communities can or should we expect privacy?

Jodi (@jsperber) pondered in her initial #MedX panel post, What’s Your Relationship with Privacy…Um it’s Complicated, that when we use the term privacy in this context, are really responding to a lack of control of the dissemination of the information we are sharing? Perhaps this is rooted in the difference between privacy and confidentiality. Confidentiality refers to the ethical grounding of the patient-provider relationship. Information shared is not divulged without the express understanding of both parties. Are we uncomfortable with the perceived violation of this ethical concept when we openly share health experiences in the public forum of social media? Do the benefits of connection outweigh the risks of information sharing? Is our digital footprint truly controllable?

In 2011, when my Tufts University School of Medicine colleagues and I surveyed patient bloggers in Communicating the Experience of Chronic Pain and Illness through Blogging, we found the majority of bloggers chose to publish their blogs on public, openly searchable platforms (such as Blogger, WordPress). These blogs were frequently shared and read by friends and family, and potentially a broader audience of unknown readers. The issue of privacy/confidentiality did not seem to be as prominent as it is today. Did the controlled ability of blogging; being able to edit, revise and then share lend a level of perceived privacy even though the information shared resided in a public space? Was there an unstated expectation of confidentiality between blogger and her/his audience? Has the increased prevalence of social media and online sharing changed our perception of the concepts of privacy or confidentiality? It is interesting to consider whether participation in online communities and the rapid, real time conversations in spaces such as Twitter or Facebook feels more vulnerable and public than the more controlled method of blogging. Do online communities and real time digital interaction with others support the benefit of group empathy but at the same time expose participants to increased fear and vulnerability?

As the ability to connect through social media evolves, in health information sharing and creating more personalized medical systems, let us begin to unpack privacy by examining and investigating broadly this elusive, ambiguous, powerful concept.

Do we have you hooked on this topic yet? We are thrilled to throw open our sandbox to those who want to think, discuss and create with us. This is the essence of a flipped panel. The conversation continues and evolves through each interaction… please join us, Colleen Young (@colleen_young), Susannah Fox (@SusannahFox), Wendy Sue Swanson (@SeattleMamaDoc), Jodi Sperber (@jsperber) and me, Pam Ressler (@pamressler). We will be using the hashtag #MedX.

This chat kick-started the 2015 #MedX flipped panel on the same topic. #MedX 2015 panelists Susannah Fox, Pamela Ressler, Jodi Sperber, Wendy Sue Swanson and Colleen Young are “flipping the panel” by sharing resources and starting the discussion early online.

CMA provides a guide to give physicians basic information about how to assess a mobile health application to decide whether to recommend it to a patient in the management of that patient’s health, health care, and health care information.

Last year, I sat in the audience at a MedX panel, listening intently to a conversation about communicating the experience of illness in the digital age. This session, captured succinctly on Storify, touched upon a broad range of topics, from disclosure to ethics to the need for “radical hospitality” (in quotes just because I love that as a phrase) to build community. Several individuals raised the notion of privacy and its significance, and at the very end of the session I stood at the mic to underscore the notion that privacy was less about keeping something secret and more about the control of information flow (here is one of my favorite posts on this topic). I suggested that the topic of reframing privacy was a topic for ongoing discussion within the MedX community.

Little did I know at that moment that this would be a panel the following year. Or that I would be on it.

And that’s the beauty of MedX: It’s never the end of a session. It’s the beginning of a conversation.

MedX aims to breaks down artificial barriers between Us and Them, Panelists and Attendees, Patients and Professionals. A culture has been nurtured that invites participation from everyone, whether or not you are in the physical space at the time it is taking place. So much so that even introverts like me are eager to take part.

This year’s panel started innocently (and fittingly) enough: with a tweet. From there it grew into a conversation on what privacy means to each of us, how it’s often hastily applied in many different contexts without consideration of whether there is alignment in how each party defines and interprets the concept. The term is used to drive and divert so many decisions in healthcare, but what do we mean when we use it?

Colleen, Wendy Sue, Susannah, Pam and I believe that this remains an area ripe for debate. We also know that MedX is the perfect space for this type of nuanced dialogue, as it draws a passionate crowd of doers and dreamers.

And by dialogue, I mean all of us. You, too. This is a part of what makes MedX great, and why I am so excited to be returning this year. The conference itself is only a few days, but the movement surrounding it continues indefinitely. In some ways the event feels like a homecoming for a family that I’ve been speaking with remotely throughout the year.

As with the last session, we’re excited to flip the panel and jump-start the conversation. This is just the first post in a series leading up to the panel itself, and we want to know what your thoughts are on the intersection of privacy of innovation. Here are some initial questions to consider:

How do you define privacy?

How do you apply it?

When it comes to social media and other online spaces, have you resigned to give it up entirely?

In addition to blog posts and tweets, we are starting to create spaces to collect and share resources. All that we generate together will be our textbook; a dynamic and vibrant guide to help us shape how we shape programs, products, policy, and everyday interactions with regard to privacy.

We look forward to taking on the topic of privacy. Together. Join the discussion in the comments or on Twitter using the hashtag #medx.

This original version of this post was first published on the The AMS Phoenix Project blog in February 2015. It’s appearance prompted #hcsmca to invite Dr. Karen Devon to host a chat on the same topic Wednesday, June 24 at 9pm ET(time zone converter). Chat questions and additional reading have been added.

Imagine that your surgical resident approaches you about the patient you are meant to operate on tomorrow. “I know that being a smoker makes this operation much more likely to fail and I just found out that Mrs. SB smokes”. “Really? How do you know” you ask. “Um, well, Facebook. She’s um, well, my friend’s friend’s friend’s mom…”

This is the type of case that sparks debate as I found out on a recent ethics panel at the American Surgical Congress. It really brings us back to the question of caring for our patients. Is caring for our patients letting them make potentially medically unsound decisions and keeping all information they wish private in the name of autonomy? Or does it mean digging deeper into this issue and sharing with our patients what we found and how, with the end result of potentially delaying the procedure to ensure adequate healing?

Furthermore, if indeed searchable information provides a lot of additional information that would allow us to better treat patients, do we have an obligation to do so as part of the medical history? Unfortunately the issue isn’t quite so simple and will require some thoughtful consideration in this new age of social media.

What can be said about accuracy of information found during online public searches? If information that is public is posted by people other than the person involved, is it really considered public in the moral, rather than the legal sense?

Patients are weighing in as well, with several communications and blogs out recently in which they ask whether their doctor should be allowed to Google them. While many of us can see the potential utility in such a practice and think of emergency situations where this might be extremely beneficial, there are certainly concerns.

We must maintain our doctor-patient relationships, which are built on honest communications and trust. For instance, if my life partner felt it was necessary to Google me for more information, that would certainly affect the question of trust between us. If they did so and were unable to express their intent in such a search, things might get even more tense and lead to breakdown. On the other hand, if a search was intended to help or protect me, on an issue where I needed or desired help, I might feel differently.

Social media is stimulating many more questions about what caring really is. It has been called the new house call – allowing practitioners to respond to patients’ needs in the place that the patient is seeking assistance. In fact, while many see technologies as creating a physical distance between providers and patients, I can also see the technology as bridging a gap, perhaps as the telephone did many years ago at its inception.

When I give a patient the ability to connect with me online, I become accessible to them in a way that may not have been possible in recent years. And I hope that I am becoming accessible in more than only the physical way. My participation on Twitter is a part of my personal and professional life that I hope has humanized me, “the surgeon,” in a way that is positive and engenders confidence.

Finally, how can we begin to deal with the exponential increase in knowledge, but also in misinformation if, as a profession, we do not engage? For example, anti-medical social media campaigns have contributed to resurgent epidemics in infectious disease. If we extend our definition of caring to public health advocacy, do we then have a moral obligation to care by tweeting the new Facebook link to organ donation registries around the world? I’m not sure that is the case currently, but I do envision a future where active participation in social media is a requirement of professionalism and an important part of the #newandimproveddoctorpatientrelationship.

There remain more questions than answers. For the #hcsmca chat on Wednesday, June 249pm ET(time zone converter) we’ll use the following questions to guide the discussion.

T1: Have you ever searched for a patient online
a. What were you looking for ?
b. How would you assess information for accuracy?

T2: Do you have concerns about searching for publicly available information about patients?
a. How would you feel about this as a patient?
b. Would you disclose to patient?

T3:Is it ever within professional boundaries to “google” a patient?
a. What would be good reasons? (ie. duty to warn, concern about safety or suicide, discrepancies in history and patient claims)
b. When is it inappropriate? (ie. Voyeurism, interest in personal life)

Throughout the year, organizations use awareness days, weeks and months to commemorate and draw public attention to hundreds of issues and causes. Last year, 18 supporting organizations, including #hcsmca and Canada Health Infoway (@Infoway), hosted Canada’s first digital health week in November.

This initial effort testing community and public support was met with such resounding interest that we are looking to grow our plans this year. On this week’s #hcsmca chat we’d like to brainstorm how we can make Digital Health Week 2015 (November 16-22) stand out and be meaningful for Canadians. But first, some facts.

Understanding the habits and behaviours of Canadians in accessing and posting health information online helps us think about how we can reach them in a meaningful way through our awareness activities. In a survey of Canadians[ii], the findings showed:

Nearly half have actively looked for health information online.

The most common places to look are search engines such as Google, WebMD, Wikipedia and disease specific websites.

Half of those surveyed have used/followed health information they found online.